PUBLISHED: 12:54 24 May 2013 | UPDATED: 13:01 24 May 2013
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Gloucestershire Multiple Sclerosis Therapy Centre is trying to raise £50,000 by the end of June. Katie Jarvis went along to hear about the invaluable services it offers, and to talk to some of its users
“Here she comes!” someone shouts out. “Our poster girl!”
And there at the door is Louise Browning: blond, bubbly, full of fun; prepared to give anything a go. Whether the daredevil feat of abseiling down Cheltenham’s Eagle Tower for charity:
(“I got to the top, looked down, and all I could say was, ‘Oh… my… god!’”
“Let’s have the truth, Lou,” someone else teases. “You only did it because of the hunky firemen waiting at the bottom to catch you!”)
Or the equally daunting feat of walking across a room.
There are three people gathered round supporting her, as Lou leaves her wheelchair and begins a jerky progress up the corridor. “Concentrate,” advises specialist physio, Penny Brisco. Every step must be a supreme effort, but you wouldn’t know. Louise Browning doesn’t let anything get in her way. Not even the relentless progress of her multiple sclerosis.
She was diagnosed a year after she got married, at the age of 30. Against the advice of her consultant, she and her husband decided to have a baby. As predicted, the pregnancy exacerbated Lou’s problems: “But I’m so proud of my daughter. She was worth it. I went down after Willow was born; I knew it would come, but I hung on for as long as I could. I thought to myself: ‘You’re not taking my legs!’ But, eventually, it was give-in time.”
Don’t be misled. This feisty girl, with her steely determination, has had her down times, too. As her condition worsened, her young husband failed to cope and they eventually divorced. There followed a period of such bleakness that Lou contemplated suicide. “And then I snapped out of it. I thought: ‘You can’t kill me! I’m staying here!’”
I’m here today, visiting one of the reasons why she managed to pull through: Gloucestershire Multiple Sclerosis Therapy Centre. It’s a humble enough building – an unprepossessing prefab just off Goodrich Avenue in Gloucester – but, inside, there’s therapy, support, specialist advice and (possibly most important of all) an opportunity to chat and have a full-blown belly-laugh.
Penny Brinnen, a volunteer who is also a sufferer, hands round some fruit buns she’s made. Her experiences exemplify why it’s so important to have these sorts of get-togethers. She tells me about a poem she once wrote, describing how, ‘People go like guests leaving early from a party.’
“[Able-bodied] Friends and acquaintances do drift off because you can’t do certain things. And not just physically: in my case, anyway, I just couldn’t keep up mentally, because I got so tired.” Although she says she has never been a ‘people-person’, I’m told, privately, how fantastic she has been at working with others, bringing them out of themselves; encouraging them. One of those she’s befriended is Jo Medley, almost immobile in her wheelchair apart from head movements. Jo was diagnosed in her early 20s, back in 1986. “What I like about coming here is that we don’t talk about MS,” she says. “We laugh and talk about every other little thing. It’s normality.”
Today, they’re making an exception for me, and the chat is all about this disease that strikes indiscriminately, without anyone really knowing why. With its attacks on the central nervous system, the first symptoms vary: possibly pins and needles; maybe double-vision, stiffness or spasms. The prognosis is also varied; while many of the people I see today are in wheelchairs, others are (as it’s described to me) walking wounded. There is no cure, but treatments and specialists can help manage the symptoms…
Treatments and specialists such as you’ll find at this therapy centre, a small, independent charity that costs around £50,000 a year to run, “Which we find thanks to grants, charity events and people rattling tins for us at Tesco,” explains centre manager, Marion Hirlehey. That sum is daunting enough, but the centre is currently pushing to raise an extra £50,000 by the end of this month. If they could secure that hefty sum, they would be eligible for a sizeable grant. And that would bring a little closer their dream of moving to a bigger building, where they could offer the sorts of therapies the ‘clients’ so desperately need.
“We’d be able to put on physio classes, including for people in wheelchairs, as well as lots of different therapies at the same time; we’ve only space to do one a day, at the moment. We’ve got about 80 people coming in and out most weeks, but there are a lot more who’d like to use us. There are about 1,000 people in the county with MS.”
“The age is getting lower. At the moment, we’re only over-18s but we’re looking at changing that. They are diagnosing school kids with it now.”
Why? Again, who knows. Partly, medics - with their advanced technologies - are getting better at diagnosing. But there is also evidence that MS is striking at an ever-younger age.
Marion shows me over the building: the small physio room, where Penny is still working with Lou; the shelves full of information on every aspect of the disease you could think of; and the ‘tank’ room, a submarine-like cylinder where the centre’s visitors can receive intensive oxygen treatment. Manned by trained volunteers, it delivers pure oxygen under pressure, reducing inflammation, calming relapses and speeding up healing.
Sufferers are quick to explain how beneficial these treatments can be. Paul and Jenny Mason from Charlton Kings come to the centre specifically to see Penny Brisco; not only is she a specialist neuro-physiotherapist, but the centre subsidises her services.
“I’ve come on really well since I’ve been coming here,” Jenny says.
Paul is quick to agree. “You can stand aided for about 30 seconds-to-a minute with me holding, which is great. And you can sit on the edge of a bed, which you couldn’t do before unaided.”
In theory, it’s Jenny who has MS, diagnosed back in 1977 after the birth of their second child. In practice, they’re in this 100 percent together: “It’s a bit old-fashioned but, when you get married, you look after each other, don’t you,” Paul says.
But surely, with Jenny in a wheelchair, they could get physio on the NHS? Paul shakes his head. “Not unless you’re in hospital. Yet it’s really important to maintain the strength you’ve still got. And every time you have an attack, you lose a little bit.”
Not everyone copes the way Paul and Jenny do. Of course, there are people who are justifiably angry at their lot; others who are still coming to terms with it. But what they’ll find, if they come to the centre, are some utterly inspirational users.
“In ‘95, they told Jenny that it was wheelchair-time. But we had a good innings, really, until then,” Paul says, looking to his wife.
“Well,” Jenny agrees, “we’re old timers now, aren’t we?”
“Yes, we’re dead lucky. With the children grown up it, it didn’t have too much impact on them. Because that’s one of the main things you look at, if you’ve got children: to try and keep them safe.
“Yes,” Paul iterates. “We’re dead lucky.”
• If you would like to help the Gloucestershire Multiple Sclerosis Therapy Centre reach its end-of-June target, or for any information about the services it offers, please visit the website, www.glosmsinfo.org.uk